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The Psychobabblers strike back with COFFI: Crawley, White, Moss-Morris et al

Discussion in 'General ME/CFS News' started by Countrygirl, Jan 21, 2018.

  1. ebethc

    ebethc Senior Member

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    but they don't go to trial b/c they're settled via arbitration, correct? so the doc pays insurance, then when malpractice hits, s/he pays a lawyer and shells out money, so the cost is ultimately insurance/lawyer/payout.. I'm not sure that the malpractice lawsuit stats include this data.. I think ppl are entitled to sue if malpractice is involved, I just don't know that the stats are complete so I've never been able to get my head around the problem..

    re insurance, I think single payer makes sense... it's crazy how expensive our system is, and I believe that insurance & big pharma have a lot to do with it... btw, my friend's neighbors are all genentech ppl and swear up and down that it's the fda who makes them pay exorbitant money to get their drugs thru trials so it's not their fault the drugs are so expensive... boo hoo. I've heard that other countries test for safety, and once it's proven safe, they release the drug - with no guarantee of efficacy.. I'm too tired to remember where I heard this, but it was recent so it may come back to me..
     
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  2. ebethc

    ebethc Senior Member

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    wow... thanks for the explanation... the u.s. will prob go in that direction soon w the current administration... the consumer protection agency is being gutted
     
  3. Diwi9

    Diwi9 Senior Member

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    Yes, the majority of cases are settled outside of court. Sometimes they settle based on negotiation, sometimes through mediation, and arbitration is less common. The civil courts are the last vestige where ordinary citizens can have their rights and interests directly represented. Accidents happen, negligence happens and that is what the insurance is for when someone gets injured. The least empathy I have for any sector of the American economy is the insurance industry.
     
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  4. Countrygirl

    Countrygirl Senior Member

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    This is certainly needed and in the future hopefully Crawley will be hit by a class action suit, along with her supporters. However, we don't yet have the necessary legal clout because the BPS people are too powerful in Europe. For example, a mum has recently lost her legal rights over a child as the judge ruled that ME and POTS, despite all the evidence are psychiatric conditions.

    The child has been made very ill by an enforced hospital admission for rigorous exercise therapy and now the allocated state-sanctioned person who has been awarded the legal rights over the child has arranged for the girl to be returned to the unit that made her very sick for yet more intensive physiotherapy as an inpatient, with mum denied access. The system generated by Crawley and her buddy White maintains that intensivie exercise is the cure for severe ME and the terrifed and powerless mum is now waiting for her very sick child to be snatched away again and returned to her previous hospital abusers for yet more exercise therapy. The thought of this makes me shudder!

    The judge and the legal guardian take the view that the severe deterioration is merely a sign of the negative influence of the mother, not the consequence of the intensive exercise therapy.Now the poor severely sick child is waiting to be admitted for more vigorous exercise despite her present state being the outcome of the same treatment by the same doctor.

    There is no legal avenue left as the court favours the evidence supplied by the BPS doctors .

    Complaints about EC have been made to the GMC but they are dismissed. So far.
     
    Last edited: Jan 22, 2018
  5. anni66

    anni66 mum to ME daughter

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    So sorry to hear this.
    Publicity may be the way to change things, but in that terrifying situation it is probably more than a parent can cope with.
    A British Katrina in many respects, just a different type of hospital setting.

    Were the parents provided details of potential harm ( on either occasion)?
    Is there a letter from mum/ mum' s legal team outlining what she sees as risk/ experience and reserving the right to sue?
    @Tom Kindlon , @Keith Geraghty , @JaimeS
    How can this be changed?
    Poster girl for millions missing?
     
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  6. Gijs

    Gijs Senior Member

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  7. HowToEscape?

    HowToEscape? Senior Member

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    How the — is this related to hurricane Katrina??
     
  8. HowToEscape?

    HowToEscape? Senior Member

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    @Countrygirl

    Sounds like a kangaroo court. Does the judge cite a known mechanism by which the mother can remotely cause her child to decline while in hospital? (rhet. q )
     
  9. anni66

    anni66 mum to ME daughter

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    Katrina from Denmark who was forcibly removed from her home where she was cared for by her parents and committed to a psychiatric hospital where she was kept for 2-3 years being " treated", before getting home last year.
    Her story is part of "Unrest"
     
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  10. anni66

    anni66 mum to ME daughter

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    It would be a better world if good people speak out forcibly as Dr Keith Geraghty has said , bad things happen when good people fail to speak.
    Such statements rarely make it into public discourse in UK.
     
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  11. Countrygirl

    Countrygirl Senior Member

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    I don't know the details @HowToEscape? , but I get your point. We know though that everything is twisted to suit their agenda.

    At the moment, we are waiting to hear about the child that was the subject of the pre-Christmas thread.
     
  12. pattismith

    pattismith Senior Member

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    The international collaborative on fatigue following infection (COFFI)
    2018

    ABSTRACT
    Background: The purpose of the Collaborative on Fatigue Following Infection (COFFI) is for investigators of post-infection fatigue (PIF) and other syndromes to collaborate on these enigmatic and poorly understood conditions by studying relatively homogeneous populations with known infectious triggers. Utilising COFFI, pooled data and stored biosamples will support both epidemiological and laboratory research to better understand the etiology and risk factors for development and progression of PIF.

    Methods: COFFI consists of prospective cohorts from the UK, Netherlands, Norway, USA, New Zealand and Australia, with some cohorts closed and some open to recruitment. The 9 cohorts closed to recruitment total over 3000 participants, including nearly 1000 with infectious mononucleosis (IM), > 500 with Q fever, > 800 with giardiasis, > 600 with campylobacter gastroenteritis (CG), 190 with Legionnaires disease and 60 with Ross River virus. Follow-ups have been at least 6 months and up to 10 years. All studies use the Fukuda criteria for defining chronic fatigue syndrome (CFS).

    Results: Preliminary analyses indicated that risk factors for non-recovery from PIF included lower physical fitness, female gender, severity of the acute sickness response, and autonomic dysfunction.

    Conclusions: COFFI (https://internationalcoffi.wordpress.com/) is an international collaboration which should be able to answer questions based on pooled data that are not answerable in the individual cohorts. Possible questions may include the following: Do different infections trigger different PIF syndromes (e.g. CFS vs. irritable bowel syndrome)?; What are longitudinal predictors of PIF and its severity?
     
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  13. Gemini

    Gemini Senior Member

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  14. pattismith

    pattismith Senior Member

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    @Gemini , sorry, I didn't pay attention to authors :lol:

    I'm not sure that this study is somewhat of any usefullness to the ME/CFS cause ...:rolleyes:

    But I found useful informations about the infections that can trigger the Post Infectious Fatigue :

    "3000 participants, including nearly 1000 with infectious mononucleosis (IM), > 500 with Q fever, > 800 with giardiasis, > 600 with campylobacter gastroenteritis (CG), 190 with Legionnaires disease and 60 with Ross River virus."
     
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  15. andyguitar

    andyguitar Senior Member

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  16. Gemini

    Gemini Senior Member

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    No problem @pattismith. Appreciate your posting the article and link indicating the authors and collaborative came together at a 2015 meeting.

    Agree the types of infection are interesting.
     
  17. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Last edited by a moderator: Feb 1, 2018
  18. Tom Kindlon

    Tom Kindlon Senior Member

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    It is quite disappointing that the following finding from the same cohort was not mentioned:

    Information on activity levels before illness seems particularly relevant. Though it would have the limitation that it was based on self-report data.
     
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  19. anni66

    anni66 mum to ME daughter

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    To me it is disappointing that there is such a narrow view. From parents forums, this illness requires a perfect storm . For this age group often there are growing issues ( osteochronditis etc) , huge impact of hormonal change, changes in education and peer groups. The combined effect of which could be damping of immune system and epigenetic changes.
    Medical histories are longer and hints may be there.
     
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  20. Tom Kindlon

    Tom Kindlon Senior Member

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    I just posted this, for what it is worth.


    I encourage other people to also use PubPeer, ideally with referenced comments.

    Anyone who downloads the PubPeer extension e.g. for Google Chrome, gets alerted to comments in various places e.g. on the journal website itself:

    http://www.tandfonline.com/doi/abs/10.1080/21641846.2018.1426086
    PubPeer link.PNG
     
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